Rare syndrome teen helping other sufferers

A Dublin teenager with a rare syndrome affecting her nervous system is keen to help others with the same diagnosis.

Teegan Bracken O'Reilly (15), from Tallaght, was diagnosed with Moebius Syndrome when she was just 18-months.

The syndrome means that she is unable to make facial expressions and has had to have several surgeries to correct her feet.

Challenges

Despite the challenges the teen is gearing up to sit her Leaving Cert next year and is keen to help others diagnosed with the rare condition.

During the summer the family were shocked to discover that one of only a handful of people with the condition in Ireland also lives in Tallaght.

Toddler Dexter Purtill Fennell (3) was also diagnosed at 18 months when he had trouble feeding.

Both families have now set up an Irish support group and will host their first official meet-up this Sunday in the Red Cow at 3pm.

"Teegan is brilliant with Dexter. Before she met him she was a little bit more self-conscious but she has since become more mature and she knows that she wants to help these children as they're growing up," the teen's proud mum Lesley told the Herald.

"There are no doctors who specialise in the condition in Ireland, so we've had to rely on getting in touch with families in the UK and the US and now we want to help any Irish families affected."

The symptoms of the condition, which affects the cranial nerves, can range from limb deformity to night terrors and problems with balance and co-ordination.

Recognised

Down the line the two families are hoping to fundraise for more research into the condition, which Lesley suspects may be under-diagnosed.

Sunday marks a world awareness day for sufferers of Moebius Syndrome and this will be the first time it's been officially recognised in Ireland.

Anyone who would like to get in touch with the newly formed group can contact them on moebiussyndromireland@gmail.com